Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
When Shelby Sparks was just five months old, she began having grand mal seizures. Throughout her early years, her family just believed that their daughter had severe epilepsy. Then, when…
Many faced with a rare disease or condition often experience financial burdens in seeking out adequate educational tools, therapeutic devices, medical equipment, resources, treatment options, and more. As described by…
This year, the American Academy of Neurology (AAN) Annual Meeting took place virtually from April 17-22, 2021. During the meeting, a variety of stakeholders discussed new treatments and research…
The American Academy of Neurology recently held their annual meeting virtually to discuss the latest research in Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS). This meeting was held April 17th through 22nd,…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
According to a story from spectrumnews1.com, three year old Israel Bombela has endured many health challenges in his short life so far. The youngster went through a bout of COVID-19…
In mid-October, biopharmaceutical company Zogenix announced that its Dravet syndrome treatment FINTEPLA (fenfluramine) received a positive CHMP opinion. The CHMP is part of the European Medicines Agency (EMA). While…
Eisai has announced that they will begin a Phase 3 trial, titled MOMENTUM, to evaluate lorcaserin as a treatment for Dravet syndrome. This decision comes after a consultation with the…
According to a story from BioSpace, the biopharmaceutical company Zogenix, Inc., has recently announced the release of results from a phase 3 clinical trial testing the company's drug fenfluramine (marketed…
According to PharmaField, the Scottish Medicines Consortium (SMC) recently approved and accepted 14 new medicines to be used by NHSScotland. Many of these medications, such as Xospata, are used to…
According to a story from PR Newswire, the US Food and Drug Administration (FDA) has recently approved a new treatment for Dravet syndrome, a rare disorder that causes seizures and…
June 23rd, 2020 will be recognized as Dravet Syndrome Awareness Day, and June is Dravet Syndrome Awareness Month. These events are dedicated to spreading awareness about the disorder among the…
As reported in Dravet Syndrome News, in a new study, researchers created an artificial intelligence system which could diagnose epileptic conditions more rapidly and easily than existing systems. Epilepsy is…
According to a story from Mirror Online, Vera Twomey from Cork, Ireland, was devastated when her four month old daughter had a severe seizure that lasted 45 minutes. Before long,…
Lennox-Gastaut syndrome (LGS) is a form of epilepsy. Most patients with this condition are resistant to current treatments and experience seizures throughout the duration of their life. They may face…
The gleaming new Dutch headquarters of the European Medicines Agency (EMA), fronting Domenico Scarlattilaan in Amsterdam’s suburban Zuidas business district, finally opened for business last month — just over two…
According to a story from BioSpace, the gene therapy companies Sarepta Therapeutics, Inc. and StrideBio, Inc. have recently announced the completion of a licensing and collaboration agreement that could lead…
According to a story from BioPortfolio, the biopharmaceutical company GW Pharmaceuticals plc recently announced that its medicine Epidyolex has earned recommendation from the UK National Institute for Health and Care…
According to a story from rekordmoot.co.za, the du Plessis family of Moot, South Africa couldn't believe it when two year old Barry du Plessis was diagnosed with Dravet syndrome, a…
According to a story from sectorpublishingintelligence.co.uk, the drug company Ovid Therapeutics Inc. has recently announced that the early data from its phase 2 clinical trial is mostly encouraging. This clinical…
According to a story from Biotech 365, the biotechnology company Stoke Therapeutics, Inc., recently announced that the very first patient has enrolled for the company's observational study of Dravet syndrome…
According to a story from Pharmaceutical Technology, the company Stoke Therapeutics experimental drug candidate, known as STK-001, has earned Orphan Drug designation from the US Food and Drug Administration (FDA).…
Cluster Seizures Approximately 1/3 of all epilepsy patients live with uncontrolled seizures. Of these, around 150,000 in the United States alone experience cluster seizures (otherwise known as acute-repetitive seizures, crescendo…
There are over 500 children in Scotland whose parents feel could benefit from a new cannabis-derived drug for seizures called Epidiolex. But recently, Secretary Jeanne Freeman had to tell…
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